Heart Concerns

My son JT is 14 and 3 months ago we went to Cincy and were told that he has an abnormal heart at 55%. So they said at this point things are ok, we will start him on Lisinopril and see how that works and we'll see him back in 3 months. They put a holter moniter on him and sent us home. Two weeks later we receive a phone call and on the monitor they found that he was having episodes of atrial tachacardia. They explained that to me and then put him on Metoprolol (which is the generic for Toprol XL).

So this was all in March, we went back yesterday and they did another echo to compare it to the one from March, so they say good news the echo hasn't changed since March! We were so happy! But then the dr says but on his EKG he is showing signs of Congenital Long QT Syndrome. Now from March until June JT has had a few episodes where his heart has raced or he feels as though his chest is heavy or someone is sitting on it. So they give us a list of meds for him not to take, tho he is on prozac & that is one of them so at once I asked if he should come off of them & the dr said no. They sent him home with another Holter and said after they review they may make changes to his heart meds and they will see us back in 6 mths. In the meantime we need to watch for his heart racing, him changing colors, fainting diziness and if those things happen we should call immediatly. Now as a mom I immediately go on the internet and see words like seizures or immediate death and have been sick to my stomach since.

3 months ago JT was put on a by pap as well. That has been a huge adjustment for JT which he has handled the way he handles all changes with a smile and great attitude.

I am writing this to see if any other of our boys have these issues? I am getting so scared that his heart is betraying us and something is going to happen to JT. If anyone could offer some information or advice I would be so grateful. I am trying so hard to stay strong for JT & his brother Dominic (who does not have DMD) but I am falling apart on the inside. I am losing faith and the ability to think pisitive, all I can think about is worst case scenario.

Thanks for allowing me to put this all down and talk about it.

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Permalink Reply by Susana Arroyo on June 9, 2013 at 3:50pm

Hello Trisha, have they suggested a pacemaker or defibrillator at all?

Permalink Reply by Trisha Stringham on June 19, 2013 at 12:10am

At this point they have not suggested either of those. Is that something they could do to help fix the problem. To be honest I am having a tough time understanding this new issue that they have introduced to us. Any thoughts would be helpful! Thanks so much!

Susana Arroyo said:

Hello Trisha, have they suggested a pacemaker or defibrillator at all?

Permalink Reply by Susana Arroyo on June 19, 2013 at 2:39pm

I am a manifesting carrier of Duchenne.
meaning that even though I am female, I still experience symptoms and signs of Duchenne MD.

I had a 2 in 1 device Pacemaker with Defibrillator placed in February 2012.

The device was used in my case because I was experiencing arrhythmias that could potentially be life-threatening.

It is there to shock me out of a dangerous rhythm if necessary.

I have never been shocked by it.

I had a Left Ventricular Assist Device placed in February of this year.

It helps the left side of the heart do its job.

I am the second person with a Duchenne Diagnosis to get such a device.

Permalink Reply by Susana Arroyo on June 19, 2013 at 2:48pm

It doesn't seem you son is at that point though.

My Ejection Fraction was extremely low because of so many years living with Duchenne.

I just want you to know that there are options if his heart were to decline in the years to come.

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